In Australia, 26,000 babies are born before 37 weeks’ gestation every year, with prematurity the leading cause of death and disability in children up to the age of five. My daughter was one of those babies in 2022, born just shy of 27 weeks.
I remember the day we found out I was pregnant with our first child, our daughter. It had not come easily, and I felt waves of both excitement and relief wash over me.
Once I had reached that 12-week milestone, my anxiety had finally abated and the focus was now on this next chapter of our lives, the countdown on to my due date. It would fall just three days before my own mother’s birthday, who we planned to name our daughter after, just as she had named me after her own mother. It would be perfect.
And while we would still go on to have a daughter named Stephanie, the trajectory of our lives would not unfold remotely as what we had dreamed up. I would not reach my third trimester, let alone get to bring our daughter home.
My pregnancy had been textbook, until one morning I couldn’t feel the usual force of her kicks. I was worried but managing to eventually count 10 movements – the ‘magic’ number touted online to indicate a baby’s wellbeing – I brushed off my initial concern as simply overthinking. But when 5pm rolled around and I didn’t feel the usual flurry of kicks I had become accustomed to, that sinking feeling returned.
My partner drove me to the hospital, whilst trying to reassure me that all would be fine. In the labour and delivery ward I was hooked up to a monitor. As soon as I heard the sound of my daughter’s heartbeat flood the room, I felt a wave of relief.
“There she is,” the nurse on duty said, as she turned to me with a smile on her face.
Despite still not feeling much movement, I was told there appeared to be evidence of movement on the trace, and I was soon sent on my way. But once home, something still didn’t feel right – call it mother’s intuition. I called the hospital but was reassured the monitoring I had received showed no signs of distress and was told to see how I went over the coming days.
I slept very little that night and come morning I was back in the hospital, this time insisting that an in-depth scan be performed as I had barely felt my daughter move overnight. That scan would go on to reveal that my baby was showing signs of anaemia.
“What does that mean?” I asked, naively thinking there must be a simple fix.
“Well, that’s for your doctor to decide,” the sonographer responded, “but there are two options; either an intrauterine transfusion will be performed to address the anaemia or you’ll have to deliver your baby today.”
I couldn’t believe what I was hearing. There I was, alone, having insisted I drive myself to the hospital, convinced I would be back home within the hour, now facing the unthinkable. I still had 13 weeks of my pregnancy to go – I couldn’t have my baby today.
That day, 2 April 2022, at 26 weeks and four days gestation, my daughter was born.
A blood test would later confirm that a massive foetal maternal haemorrhage (FMH) had occurred.
While the maternal and foetal blood circulations are usually separated via a placental barrier, in the instance of an FMH this barrier malfunctions, resulting in the foetus losing blood cells into the maternal circulation.
While a mixing of blood between mother and baby can occur in up to 96% of pregnancies, usually at the time of delivery, a massive FMH during pregnancy is rare, estimated to occur in up to 0.5% of pregnancies and can lead to severe anaemia, brain damage and even death.
I ended up being in that 0.5%.
Once born via emergency caesarean section, Stephanie was whisked away to the neonatal intensive care unit (NICU). In the coming weeks I would watch on as nurses tended to my baby, as her little body, not yet ready for this world, lay in an incubator, covered in cords, undergoing procedures and having to ask permission to hold her.
In that time, I would attend countless family meetings in which we were given bad news, again and again. As a result of the blood loss, we were told, our daughter had experienced loss of oxygen to her brain and scans were showing significant brain damage. The prognosis was grim.
“Do you know what the statistics are Anastasia? Do you know the survival rates? Do you know much about cerebral palsy Anastasia? Do you know much about disability? Do you know what your daughter’s quality of life will be? What does “quality of life” mean to you Anastasia?”
I’m usually the one asking the questions, that’s my job; I wasn’t used to being in the firing line.
Doctors were shocked Stephanie had survived at all given how low her blood count was at birth. While they couldn’t find a reason for the FMH, calling it a ‘spontaneous event’, they would praise me for coming in when I did and listening to my instincts. While grateful to meet her, seeing my daughter prodded and poked, there were times I wondered why I was being praised – what had I saved her for – a life of pain?
Stephanie would go on to live for five weeks. Undoubtedly five of the most challenging, eye opening, and meaningful weeks of my life. The day she died, a part of me did too.
In my grief, my arms and my soul felt empty. Less than a year after losing our Stephanie, I found out I was pregnant with her brother. While it was a pregnancy fraught with much anxiety, it is a relief to have him here now, healthy and thriving. And though my motherhood is no longer invisible, when people see me parenting my son, what they don’t see is that I am a mother to two.
Not once did I dream that I would come to be on this side of the statistics. I used to think ‘why me’? But why anybody? Statistics are real, everyday people; people you stand next to in line at the supermarket, people you work with, people in your own family.
I will never forget what it felt like when I finally had the chance to hold my daughter for the first time; the stress and worry dissipated, and I felt a serenity come over me that I had never felt before. It was like coming home. Now all I have are memories, my walls adorned with her images in a bid to give those who walk through our home permission to say her name.
Red nose is a charity providing support to young families including counselling to families impacted by the sudden and unexpected death of a baby or child.
Say Their Name Day, a Red Nose initiative, is taking place on 25 March. For more information, visit https://rednose.org.au/event/say-their-name